Monday, April 25, 2011


Maia had her radiologist appointment at 4 pm the day of her birth, when she was only 3 hours old, and was referred to a pediatric neurologist because she appears to have something called "cord tethering." It is not life-threatening and is fixable especially when caught so early (sometime a baby without external symptoms such as her skin issue can grow into young adulthood before symptoms develop that allow diagnosis, at which point treatment options are more limited). Mommy and Daddy need to do a lot more research but have been very busy, our basic understanding is that the spinal cord, which has many fibers that should be free so that it can grow with the person and also move and expand with movement, is not free in Maia's body near the L4 and L5 vertebrae. It is "tethered" at the L4 and L5 vertebrae, somehow the fibers are attached to each other and also to her skin, and therefore will not be able to move freely as she grows (for now it is not an immediate problem). The skin covering over the vertebrae is very thin - i.e. she only has a few layers of tissue over the spinal cord at that point:

Because there is not immediate danger caused by the problem, she is staying with us in the hospital until we are discharged on Tuesday. She is nursing like a champ and is very strong and has her daddy wrapped around her little finger! But immediately after we leave on Tuesday we will go strait to Childrens' Hospital of Orange County and check her in there. She will have an MRI and we will develop a game plan with her pediatric neurologist, which will potentially involve surgery later this week to release the tethering. If the surgery is successful, she will need follow-up ultrasounds and possibly MRIs as she grows to ensure that there is no missed tethering and that none of it coming back, but potentially the surgery would fix the problem to the point it would never be an issue again.

No spinal surgery, and no surgery on a 5 pound infant for that matter, is ever "minor". But of all the things that could be wrong with a spinal cord, we feel thankful that it is a minor problem, relatively speaking. I was very emotional when they told me we wouldn't be taking her home, but I am dealing with it a lot better now.

Mommy, Daddy, and grandparents have enjoyed every moment of getting to know Maia over the past few days. She has been getting a lot of love and we are just spending every minute we can together so that she'll know how many people love her when she has to be left alone more and possibly operated on later this week:


  1. Wow you guys have already been through a lot. congratulations on your additions, they are beautiful. I was glad to see you are doing a blog so we can follow their progress. You will be in my heart and prayers. It's fun to see that great grin on all of your faces.

  2. Hi Elise,

    I will pray for a successful surgery and speedy recovery for Maia. I can't imagine what it will be like to check her to the hospital and so I pray for peace and strength for you and Ryan.

    lots of love, Julie